OI Groups

I have been desperately looking for OI support groups and I have found some and they have been incredibly helpful. I recommend them to anyone looking for assistance or information.

I have also found a few blogs of parents whose children have OI. This is where I find my issue Emily has mild OI type 1 or type 4. I have come across a lot of parents whose' children are much more sever that what Emily is, and then I feel guilty for feeling the way I do about Emily having OI, it was always a possibility but it was something I so desperately hoped would never touch her. These parents are so happy to have these amazing children in their lives and they celebrate every triumph no matter how small their kids have, and I feel their joy and I am in awe.

I have the most amazing child. She is happy all the time, she smiles all the time, she hardly ever cries and she is just a joy. She eats well. She sleeps well and she is the most amazing thing ever, and then she has OI. Which I know is devastating to a lot a people and to us, but it still feels like it's tacked on to who she is as an afterthought and it doesn't define who she is or who she is going to be. I wouldn't change any part of her, but why do I feel so guilty for feeling sorry that she has OI. I know how good we have it and maybe that’s the reason. I don't really have anything to complain about. I have the closet to perfect child with OI. She doesn't think there is anything wrong with her so why should anyone else.

Maybe I need to try and look at it from a different point of view. which one i am not sure yet but I think it’s something I will work on.

Emily's first Pamidronate treatment

Emily’s first Pamidronate treatment, it had to be one of the most difficult things I have had to do. It goes against every part of me to hold my child still so they can put a drip up. She is so little and she doesn’t understand, and it breaks my heart every time. I am supposed to be protecting her!! I keep telling myself that it’s worth it that the time in hospital and the drips and the constant monitoring is all worth it. Only 12 days a year, only 12. I also think it’s harder because it’s the first. Let’s hope my theory holds true and the treatment in November is easier.

On the Saturday, they took blood in these tiny little vial’s and put the line in her foot for the drip. First he (Dr Roos) tried the left foot and the cannula didn’t hold so we tried the right. Which made me a bit nervous. Not of the line but because I had to hold it and we had only taken the splint off the day before. She didn’t not take kindly to any of this, she screamed and was most upset that this was sore. I wanted to take her away and go comfort her in the corner. Once we got through that it was ok we were ready to go. It then took 4 hrs to get the medication, as they only started the drip at 2:30pm and it ran for 6 hrs. So at the end of it I had a very tired ratty baby that was not impressed at all and they then had to flush the line which made her cry again. I hated every moment of it. I won’t go on about the night, we’ll just say that Emily does not like sleeping in strange places with strange noises. We did the this for 3 days and there were temperatures and a little vomiting and a little bit of bone ache (she was very ratty at one stage and I assume it was bone ache) But at least we got the drip going earlier in the day.

Dr Roos is the kindest man I have seen with children, he really makes you feel like he cares about your child and that the last thing in the world he would want to do is hurt your child in anyway. When he had to put the line in he actually sweats, he apologies constantly and really doesn’t want to hurt. I am confident in his care for Emily and I do trust him with her life.

Then you meet other moms with their tiny babies and they have cancer and they are on chemo and it makes me feel so guilty for feeling the way I do about OI. OI is not life threatening, she will survive this. She may break and there will be pain but it’s not slowly killing her. I will still have my little baby tomorrow and the next day. And all these little kids they are so very ill and feeling so sick and they always seem to have the energy to smile at you. I don’t know how those moms cope.